Wednesday, December 2, 2009

update

Its almost impossible to begin to even write this post...
we have been on one hell of a roller coaster the last few days and now we have crashed. yesterday makenzies results came back for the sma test, it was negative. happiness, fear, joy, frustration were just a few emotions we were feeling. did that mean it was a good thing or a bad thing. the doctors were shocked. she was diagnosed as an sma baby, now its not true...
the doctors wanted to take a step back and look over everything once again, come back the next day (today) with a clear head and see what we would do next.

today-----
the doctors came back with a solution... they went back and looked at her chest xrays, all her charts, all the other many many tests they did over the last couple weeks and pretty much figured out what they think it is. they sent some blood to get another genetics test done which unfortunately could take 3 weeks - 3 months before we will get the results back. in the mean time, there is a test they can do and get immediate results to make a diagnosis.
they did an ultrasound of her chest, diaphragm. her diaphragm worked great while she was on the ventilator however once they turned it off her diaphragm just sat there. that means her diaphragm is paralyzed. the only neuromuscular disease that has a paralyzed diaphragm is whats call SMARD = spinal muscular atrophy with respiratory distress... this is a very rare type of sma... rare meaning only 5% of all sma patients have it.
smard is very similar to sma except it also has respiratory distress. that means instead of her muscles and nerves slowly deteriorating first, its her respiratory that goes first (the reason for her paralyzed diaphragm) then her muscles and nerves. this is different from just sma which is why her test came back negative.
what does this mean- we have a few ridiculously unimaginable options...
-we could leave makenzie here in the hospital on the ventilator until her little body gives up.
-we could get her a tracheotomy. this would mean she would be able to go home but it would also come with all the risks and responsibility's of having a trach. for kenz, it would be more than having a trach. she would have a much greater risk of getting sick and all sorts of different infections. this option would also have makenzie slowly deteriorating at home. most smard children are completely paralyzed before age 1 (not even able to lift a finger). they are not sure if she would make it to age 1 or if she would deteriorate sooner or maybe later. this would leave us to watch her slowly go.
-the last option would be to let our incredible little girl go now. take her off the ventilator and let her go in peace.

there is no easy way to write this. there is no easy way to make this decision. i want to run and scream. i cant believe this is happening.
i don't know how any parent could make that decision and now I'm in the middle of it.
of course i say right now, like many would, i don't care what i have to do or learn i just want her. but this really is not about me and what i want but what will give makenzie the best quality of life.
for kenzie she doesn't know any other life than the life she is living now so she would be used to this way of life but is it fair to her to live that life?
I'm in the middle of denial and excruciating pain. this is not how life was suppose to happen for her. i cant believe ryan and i are now in the position we need to choose our daughters life. i cant believe I'm not going to grow old with my daughter, i cant believe i wont be able to send her to school, watch her dance, take her to play dates. my world is crumbling and i am being buried alive. ryan is right here with me. we are both trying to be strong but no matter what we do our world is hell. I'm angry now. I'm sad, beyond sad and beyond angry. its not fair. i don't understand why this is happening to my baby. i don't understand why she cant just be a baby and grow up. i need her to yell at me and call me names when she is teenager, i need her to want to play barbies with me for hours when she is 6, i need her to be my best friend for the rest of our lives. i cant even write these words out and really express our pain. there is nothing to even say- our life is over in our eyes. its so hard to see how we can get past this. i cant imagine my life without her hands, her eyes, her smile, her feet, her tummy, her knees, her butt, her ears, her nose.... i don't know how i can wake up tomorrow knowing its one day closer to not having her. i don't even know what I'm suppose to do or think.
i cant even write another word-

37 comments:

Alana said...

Kendra and Ryan,
My heart is breaking for you. I am so sorry that this is happening. Although I know there is nothing that I can do to help ease your pain and sorrow, please know that I love you all and pray that you will be able to have comfort and peace in the decisions that you have to make.

N said...

My words are so fruitless and can only imagine the perils of the parent shoes you are wearing. I sat in futile, frustrated effort awhile - Sad. I might say or a whit-clever word to smirk a smile from you - I can not. My heart is overwhelmed with utter loss and sanction for what decision you are faced with. I feel fierce in my soul to expound a word that may release any part of pain you are beguiled with and I may only pretend to understand. I have not come to the hospital from utmost fear from the stress of thoughts and morning days-night you have been impaled with. Fear of not knowing what to say.

Ryan and Kendra there are days your Daughter will be in-side your soul, food for the everlast of the world she's a part of. She will grant a smile only you two know and crest even the worst day that you can see the shine in her eyes and know that her love was more pure than the fresh fallen snow. You will catch glims of her in your thoughts and know she loves you and sees' only things she now may take with her as a child.

"children moments are best described as mine. my smile, my laugh, my smirk, my noise, my quick to hold a hand. mine. mine to hold, touch, smell, and mine to lullaby in at night. but of all, mine to love"

I love you and yours.

TMI Tara said...

Sweet Kendra...

I am speechless, but I want to let you know how much we love you and are praying for you, Ryan & Makenzie.

I also want you to know that my blog friend's son Dakin has this exact diagnosis and lives a life full of joy. http://ventsuperman.blogspot.com/

I hope that Heavenly Father and His angels will be with you and provide the comfort and peace that only they can bring.

Sending much love.

FROGGITY! said...

i am crying right now, i just cannot believe this. i don't understand it, this is the hardest thing... can't even imagine.

i will be lifting your family up in prayer group today, i hope you don't mind... just know you have people across the world thinking of you and praying for your little girl and family and you.

stay as strong as you can, even though i know your heart is broken. :( God bless you.

Marla @ Stolen Bon Bons said...

Oh Kendra as I sit here in tears and my heart breaking I know it is nothing campared to your pain and anger. She is such a precious baby girl and this is just all so unfair. I know there are no words that could make any of this better but I am truly sorry. Sending love and prayers your way.

Gaspegirl said...

Kendra, I can not imagine what you are going through although I want you to know that if you need to lean on someone that I am available to help you. Reach out to the people who you need and know that we are all praying for you and your sweet family.

The Higbee's said...

My thoughts and prayers are with you. I know there are no words to help ease the pain. You are so strong to still be still in one piece! I am just sick to my stomach. I wish you the best in this difficult time!

Becky said...

Kendra, sweet Tara introduced me to you and your blog. She was visiting with a few of us mom's who have special kids yesterday and told us all about you. My heart breaks for the anguish that you are feeling. Please know that we will keep you in our prayers. Much love, Becky

Esther said...

I'm so sorry Kendra. I can't even imagine being in the position you're in with the choices that need to be made. This seems like such a horrible nightmare.

April said...

Dear Kendra,
Tara told me about your sweet little family and the challenges you are facing. I just wanted to tell you how deeply sorry I am for your heart ache. We have spent a lot of time in the PICU with our little boy, and we understand how difficult it can be. Please know that my heart is so tender for you and your sweet baby girl. We'll be praying that Heavenly Father will bear you up.
Sending love
April
ps. My son has a trach and we have him on a ventilator at night. If you need someone to talk to as you consider those options, please let me know.
my e mail is aprilmoody@Juno.com,I'd be happy to e mail you my phone number as well.

Chanse and Janell said...

Kendra,
I am so sorry for this news. I can't imagine what you are going through. I think about your family and Kenzie everyday. Much love and thoughts being sent your way.

caitlin and brinton said...

I have no words - all I can say is I'm so sorry and I hope you can find some sort of comfort with whatever you decide.

starnes family said...

Praying for you. For strength and courage.

For faith.

-Casey

Tyler & Shanna said...

Kendra - I'm not sure if you remember me, I'm Sarah Guymons cousin, Shanna. We met a few times and through her i came across your blog and have read about your darling little girl. Tears filled my eyes as i read your last post. No, you don't deserve what you are going through at this time and i, like you, would be filled with anger, sadness and so many emotions and i can't even begin to imagine all you are going through. Please know that my thoughts and prayers are with you, your husband and your precious beautiful baby girl!

Shanna

Anonymous said...

I found your blog through a friends blog which led me to Dakin's blog...there are no words to ease this unimaginable pain, but know there are many people thinking and praying for the 3 of you and your family and friends as you head into all these tough decisions and painful days. Sending you love and strength to keep going, one day, one decision, at a time. Emma

Anonymous said...

Kendra,
Wow, I never thought I would be here trying to think of what to say. I am so sorry! Being a mother myself, I can not even begin to imagine the kind of pain you must be going through. Please know that you are constantly in our thoughts and prayers. My dad said to please let him know if you would like him to come give her a blessing, or even give you and Ryan a blessing when it comes to making this difficult decision. We will keep you in our prayers.

Alisha

Angie P said...

praying for you all, don't give up hope, God still preforms miracles

Anonymous said...

Ken and Ry,

I don't know what to say, I can't even imagine what is going on in your heart, I don't have kids but I do cry with you. I love you and just know that no matter how long you have your little girl for, she was given to you for a reason!!

Love ya Jenn Gott Louie

Tracy said...

Please know your family is in my thoughts and prayers.
Hugs
Tracy

Kristin said...

I am so so sorry. I know there are no words that could possibly ease your pain or burden right now. I'll be praying for you and your precious baby!

Angela Pitsinis said...

Kendra and Ryan,

My heart is breaking for you both. I know that there are no words that I can say to take your pain, frustration and sadness away. I think about you and your baby girl everyday. Please let me know if you need anything at all. I would love to come and see you, please let me know the best time.
Lots of love, please call if you need anything- 801.243.5497
Angela Pitsinis

sherry said...

Dear sweet family,

With a heavy heart i am crying along with you. all i can say is that she is your child and in the hereafter you can raise her to adulthood. remember that she will always be in your hearts and with your souls. she must have been a very strong spirit to come here and have to only gain a body for such a short time. my and the rest of the baranowski's have you in all our prayers.

love aunt sherry

Suzi said...

Kendra and Ryan,

This is such an unimaginable horror. Your strength as a family and support for each other will help you through this time. Stay hopeful and enjoy your sweet little lady.

All of my love to you both and little Kenz,
Suzi

The Pachuilo Family said...

Kendra,
I am so sorry! My thoughts and prayers are with you. It's not going to be easy to decide which option to go with, but I am sure you will know what is best for you and your family. We love you.

Devon said...

Kendra, I got your message--I would be happy to talk to you more about SMARD. There are not a lot of kiddos with it, like you said, but many of the ones we know are thriving (Dakin, for example). Are you seeing Dr. Swoboda?

PLEASE email me. poundoutsma@gmail.com I would be happy to help put you in contact with the other SMARD families. Anything I can do, sweetie. HUGS HUGS HUGS to you. I'll email you tonight too.

katie said...

Kendra,
I happened to see Jill's facebook profile yesterday friended her. She graced me with her acceptance of my request today which is how I found your blog.

I am completely shattered to read through your entries over the last couple of months. You're living through something I have feared my entire life after my parents faced similar experiences with their first child when they were around your age. I'm sure I couldn't survive such tribulations.

After reading your last entry I had all these memories of tending you as child pop into my head. I'm truly amazed at the strong women you've grown into. You are in the thoughts and prayers of my family and mine.

Lots o' love, Katie Simon

Bekka said...

While we do not know each other, we have walked a similar path. My son, Oliver, passed away in August from SMA I. The decisions you are faced with are the worst kind to make. I wish I could do something, anything to make it easier and to make it hurt less.

The advice I will give you is that you need to talk openly with one another. Grab your tissues and talk it out. Don't hold anything back. It's best to approach these kinds of decisions by looking at all the options, all the possibilities and all the heartache. I won't lie to you; it'll be tough. But it is so important.

If your hospital has a palliative care team, a child life specialist or social workers, ask to get them involved. They can help you to better understand the ins and outs of all the choices. Also, there is a great book entitled "Shelter from the Storm" that helps you navigate the issues of being a parent of a child with a life threatening illness. Our hospital's palliative care team gave us a copy and, while it was difficult to read, it help us to ask the right questions and get the right information to make the best choices that we could make.

There are plenty of families willing to talk with you - if you want. There is an online network of families that deal with SMA and SMARD. You might find it helpful to connect with these families. The link is:
http://smaspace.ning.com/
You can feel free to ask anything there.

Finally, please know that you are not alone in your journey.

Rebekka
Ollie's mama
olliestale.blogspot.com

Devon said...

Kendra, I emailed you--you can call me tonight if you have a chance and want to, or tomorrow, or whenever. I just wanted to let you know--sometimes my email from that address gets tossed in spam.

Lacy said...

Kendra and Ryan,
Sorry to hear about your beautiful little girl. Know that what ever decision you guys make it will be the right one. We are shaped by the trials in our lives this will be your biggest. Know that the people around have you all in our hearts.
Lacy Nelson

♥ Stephan & Michelle ♥ said...

Kendra,

Its been a few days since Ive been on here and I always check up on how Makenzie is doing on your blog. And I dont even know what to say as do many on here. All I can say is keep praying and we will for you guys to, and hopefully in whatever may happen you find comfort. And know that Im here. Im so very sorry... Im still gonna hope that some miracle will happen to you guys.

Anonymous said...

Kendra and Ryan,
If only i could only take this horrible decision from you and give you all the dreams you hope for with Mckenzie, I would. Mckenzie is so adorable and perfect. I love you and as I watch you each day, I am amazed at you and your strength and love.......
Words cannot express my sadness. I pray that you take each day and love and appreciate it. My love and prayers are with you everyday. love mom

Kaily said...

Kendra, I have no words, I really can't even express how sorry I am for what you are going through, and I don't know how you are even handling this. You and Ryan are so amazing and you guys and you guys only know whats best for your Kenzie. I am so sorry Kendra. Please let me know if you need anything.

sherry said...

She will to go directly to our heavenly father and not have to experience all the suffering of this world. i know that you will have a chance to raise her on the other side. my thought and prayers are with both of you and kenzy at this time.

Love Grandma Phyllis

American in Norway said...

Sending you prayers from Norway... Hang in there...hugs.

malory said...

Kendra,
Words can't even begin to express how sorry I am. I couldn't even imagine how much this hurts. You guys are all in my thoughts. Please please call me or text me if you need anything at all. 801-425-7866

-Malory

Anonymous said...

Oh Kendra.... My heart bleeds for you. I can't tell you it's okay because... IT SUCKS. Omar and I and my family have you in our prayers and what ever you need please find us. Give baby girl our love. She is the most amazing angel you will ever meet. I'm so sorry....
ALL our love,
Kate and Omar

Brian and Kara said...

Hi Kendra,

I came across your blog and wanted to let you know that you, your husband and your sweet baby will be in my prayers. I'm so sorry that this is happening! It's not fair! I am a pediatric physical therapist and work with kids that have SMA, so I know what type of illness you are dealing with. Be strong and know that there are many many people praying for you and your family, especially your sweet McKenzie!

~Kara :)

p.s. - she really is gorgeous!!!

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